Don't Miss This

When a handsome deacon from her Oakland, Calif., parish began wooing her, retired nurse and divorcee Nel Davis felt as if she were in a storybook romance. After a courtship and engagement that included exacting premarital counseling, the couple - both church elders - wed in 2004.

One morning months later, as Davis was making the bed, her husband’s Bible fell to the floor, an opened envelope slipped from between the pages. Davis drew the paper from its envelope. She stared down at the results of an HIV test her husband had taken in 2003, a year before they were married, stating that he was HIV positive. Having felt ill as early as their honeymoon at Disney World, Davis knew what that meant for her own health.

“During all that time taking care of others, HIV-AIDS just wasn’t really a health concern of mine," said Davis, whose background as a nurse didn't prepare her. It “was basically not something I worried about because of the lifestyle that I lived, which was not risky. I’d heard about it, but personally, I did not educate myself to it because my view on that was, 'Well, that would never happen to me.' ”

Now she faced the daunting task of telling her children she was HIV positive. “That was the hardest part,” she said. “There was a lot of embarrassment and shame.... You teach them when they’re teenagers about safe sex and respect for other people’s bodies and so forth, and here I am, mom and grandma and great-grandma, and I have to tell them that I am HIV positive.”

Davis split with her husband, who she said she still loved but could never respect.

Black America's Disproportionate HIV Burden

Nel Davis’s story opens the gripping new PBS Frontline documentary "Endgame: AIDS in Black America," (written, directed, and produced by Renata Simon and airing Tuesday, July 10), an exhaustive examination of the disease in the African-American community. Black Americans such as Davis “face the most severe burden of HIV of all racial/ethnic groups in the United States,” according to the U.S. Centers for Disease Control and Prevention. Although blacks make up roughly 14 percent of the U.S. population, in 2009, they accounted for a disproportional 44 percent of new HIV infections, CDC data published in August 2011 shows. One in 16 black men today will be diagnosed with HIV at some point in their life. Two-thirds of new HIV cases in women are in black women. Among adolescents, blacks account for 70 percent of new cases.

The numbers are indeed staggering - and even more so when you consider that HIV-AIDS is an almost entirely preventable disease.

Criminalization of Drug Offenses vs. Public Health

The devastating effect of HIV-AIDS in black America cannot be blamed on any one factor. Public health mistakes, cultural stigma and a lack of coordination by authorities have all combined to complicate matters.

Going back to the early days of HIV-AIDS, at the beginning of the 1980s, the first five AIDS patients treated at UCLA Medical Center (the first hospital to identify the new disease) were white gay men. The sixth and seventh patients, however, were black. But the misconception quickly arose and spread that the new killer virus affected only white homosexual males - a critical error that 30 years later still thwarts attempts to control AIDS.

Even more devastating, however, was how the disease emerged, said Robert Fullilove, associate dean for community and minority affairs at Columbia University’s Mailman School of Public Health in New York. As the 1980s progressed, rising unemployment and despair in poor black communities fueled a booming drug problem, particularly injection drugs. As drug use increased, so did drug-related crime.

Under pressure to respond, authorities chose to criminalize drug use rather than address the underlying social issues. Among other things, President Ronald Reagan's federal Anti-Drug Abuse Act of 1986 made it illegal to possess syringes. In Frontline's "Endgame," Fullilove points out how users shared needles to avoid arrest for possession of drug paraphernalia. HIV spread quickly among injection drug users, and then to their partners, and then to partners of those partners and beyond - in an ever-widening web of infection.

The harsh 1980s drug laws put an unprecedented number of black men in prison for nonviolent drug offenses. In some communities, as many as 50 percent of young black males were incarcerated. This, too, created unintended consequences - but this time for black women. With so many men in prison, according to the Frontline documentary, men in the community could dictate the rules of sexual play. If a man wanted unprotected sex, he was likely to get it, which unfortunately spread the virus more widely among women.

The Cultural Stigma of AIDS

Many local and national leaders failed to respond, despite the fact that AIDS was wreaking havoc throughout black communities. HIV-AIDS was just one of a long list of vital issues for black leaders to tackle, including education, housing and jobs. Other leaders were ignorant of the problem. “I think we thought about AIDS as affecting only white people, and then only white gay people, and there were no black gay people,” recalls Julian Bond, veteran 1960s civil rights activist, Georgia state representative, and chairman emeritus of the NAACP, in the documentary.

Even the traditional bulwark of social support and activism in the African-American community, the black church, has done little to address the AIDS crisis. In "Endgame," Phil Wilson, president and CEO of the Black AIDS Institute, recalls an eye-opening moment while he was addressing the Black Ministerial Alliance about AIDS. One minister jumped up and shouted, “We’re not going to let them blame this one on us.” The frantic desire that AIDS not become another "black problem" in the eyes of American society has severely hampered prevention and treatment efforts, Wilson says.

An African-American aversion to hanging your dirty laundry in public didn't help. “You don’t tell other folks how poor you are. You don’t tell other folks that you can’t pay the rent. You don’t tell other folks that so and so is sick. And you certainly don’t tell other folks that there’s a gay son," he says. "And you don’t tell other folks that someone in the family has AIDS. It’s all about those things that you think are ways to protect yourself - going all the way back to slavery, that the slaves kept secrets ... some of that cultural baggage travels with us.”

These cultural views reinforce homophobia as well. “The African-American community and a lot of communities have stigma around being gay,” says Bay Area AIDS activist Jesse Brooks, who is gay, in the film. “I had an uncle, and I remember being in the car with him and he pointed to an obviously gay man and said, ‘I hate them!’ And this is my uncle, who was my favorite uncle, and it crushed me. And so it also led me to not want to open up about who I am, and for me to be ashamed about who I am.”

Today, the AIDS epidemic in the United States is unique. While HIV-AIDS rates have dropped around the globe over the past 10 years, the U.S. rate has remained steady. Part of the reason for the decline abroad is the nearly $40 billion the U.S. government has spent on the global AIDS crisis since 2003, the year President George W. Bush launched the President's Emergency Plan for AIDS Relief (PEPFAR).

“If black America were a country unto itself, it would have the 16th worst epidemic in the world,” Phil Wilson says in the film. “It would be eligible for PEPFAR dollars.”

No major city illustrates the problem better than the nation’s capital: in 2011, the prevalence of HIV in Washington, D.C., was higher than that in Rwanda, Kenya, Burundi, Ethiopia or Congo. Washington is a Southern city, and the South is "where the nation's epicenter of HIV-AIDS rages," according to "Southern Exposure: Human Rights and HIV in the Southern United States," a November 2010 report by Human Rights Watch.

The South has the highest rates of new HIV infections in the country, the most AIDS deaths and the largest number of people living with HIV/AIDS, according to CDC figures. Forty percent of Americans living with AIDS live in the South, and as with the rest of the country, blacks bear a disproportionate share of the region's burden.

A laundry list of health and economic indicators has contributed to the South becoming Ground Zero of the nation's HIV-AIDS epidemic: the nation's highest poverty rates and highest rates of uninsured residents (an estimated 18 million Southerners lack health insurance), large numbers of unemployed, and the worst overall health in the country, according to the Southern Aids Coalition report "Southern States Manifesto: Update 2008." The coalition's report specifically calls on Southern and national black leaders "to realize that we are in a state of emergency as it relates to the disproportionate rate of infection of HIV/AIDS and STDs."

The Endgame for HIV-AIDS in the Black Community

Despite the bleak situation, work is being done to control HIV-AIDS. In July 2010, President Barack Obama announced the first National HIV-AIDS Strategy and unveiled the White House Office of National AIDS Policy. Based in part on learnings from PEPFAR, the administration's vision is to make the United States “a place where new HIV infections are rare, and when they do occur, every person regardless of age, gender, race/ethnicity, sexual orientation, gender identity, or socio-economic circumstance, will have unfettered access to high quality, life-extending care, free from stigma and discrimination.”

With concrete goals such as lowering the annual number of HIV infections by 25 percent, the strategy’s 12 Cities Project takes special aim at the U.S. cities with the highest AIDS burdens, which are, in order: New York; Los Angeles; Washington, D.C.; Chicago; Atlanta; Miami; Philadelphia; Houston; San Francisco; Baltimore; Dallas; and San Juan, Puerto Rico.

But Lisa Fitzpatrick, MD, MPH, director of the AIDS Education Training Center at Howard University and a member of the Washington, D.C., Commission on HIV-AIDS, said that the government can only do so much in the fight against HIV-AIDS. And, she said, the solution isn't directing more money at the crisis either.

"We already spend billions of dollars on HIV," she said. "But where is it going? What are we doing with it?"

Based on her work on the front lines in D.C., Fitzpatrick believes what we need instead of more dollars is more courage. "We've done a lot of research looking at why HIV is being transmitted," she said. "We've done a lot of research looking at what some of the predictors are of who's going to fall out of care and who does well on care. We have a lot of information. But in order to address these things, we have to get out of the box."

One way to do that, Fitzpatrick said, is for doctors and others working on the disease to get out of their clinics and laboratories and speak face to face with the people they're trying to help. She's certain that if everybody attending the 19th annual International AIDS Conference in Washington, D.C., July 22–27, went home and spent an hour a week "boots on the ground, in the community, talking to people about HIV," the impact would be amazing.

She shared one story that reveals the impact such encounters can have: "I was in a café two weeks ago and there was a guy sitting behind me who recognized some of the work I was doing on my computer and asked me if was a doctor. And he says, 'So you treat the AIDS?' And that sparked a long conversation. But the take-home message for me was, here is a 29-year-old with two years of college under his belt and he was asking me if you could get HIV from sharing a cigarette. He was telling me that he feels uncomfortable lying on a sofa or taking a shower in the same tub as where somebody who is HIV positive had been before him. Being in the same house as someone who is HIV positive makes him quote, unquote 'nervous.' This is in 2012 and we still have people who don't understand how HIV is transmitted."

If Fitzpatrick is frustrated, she remains hopeful. For one, thanks to improvements in medications, AIDS today is treatable, if not curable. Fitzpatrick regularly tells her patients, "The medications are so good that we can effectively treat you, and you're not going to die of AIDS."

Plus, research is ongoing.

"There are so many committed, dedicated, bright people working on this," she said. "But we need to chorus our voices. And we need to get on the same page."

Nel Davis: A Patient Turned AIDS Activist

Although Davis, whose story opens the Frontline documentary, was originally devastated by her diagnosis, she now volunteers as an HIV-AIDS counselor, and is ravenous for information about the disease. “Every clipping, whatever I can get my hands on, I get it and I save it,” she said. “I have my own little personal library with the information now, so I can share it with others.”

And by sticking to a strict treatment regimen, she has kept her infection in check. “It’s been a battle, but I am determined not to let it be in control,” she said. “So, by the grace of God, I’m doing quite well.”

“Endgame: AIDS in Black America,” a special Frontline presentation, airs on PBS stations Tuesday, July 10 at 9 p.m. For more information, visit PBS.org.

This site complies with the HONcode standard for trustworthy health information: verify here.

Advertising Notice

This Site and third parties who place advertisements on this Site may collect and use information about
your visits to this Site and other websites in order to provide advertisements about goods and services of
interest to you. If you would like to obtain more information about these advertising practices and to make
choices about online behavioral advertising, please click here.